Tuesday, 24 June 2014

What I've been doing #2

Socialising

Last weekend it was our seventh wedding anniversary and we went camping with some friends. We go every year as they also celebrate their anniversary then too and it's nice for the kids to all see each other as we live over a hundred miles away. It was a full moon and the weather was pretty kind to us.

 
 
 
All in all it was a lovely weekend although it was quite busy!
 
It was also my birthday at the weekend and I turned the grand age of 35... I had mixed feelings about this. See my earlier blog post - becoming middle aged

However I am embracing it and had booked tickets to one of the Edinburgh Zoo late nights, which included; live music, a silent disco, different street food stalls, face painting?! and access to the Zoo enclosures at night to see the animals getting ready for their kip! It was a great night and I managed to get through it ok.

 


Unfortunately though after those viral infections that I'd had pretty much back to back, I didn't feel great in the lead up to it. On Friday afternoon, I had quite a high level of fatigue, itchy skin and burning eyes and as a result of not slowing down I have had the inevitable payback. The last few days I have been feeling more fatigued, irritable and have had to cut back on the exercise. I have had a terrible headache on and off, which fortunately is a symptom I don't get much now although I used to, and don't know whether it's due to the tail end of the virus or an ME symptom. Paracetamol has been working though and I have been drinking lots of water.

For my birthday I got a lovely picnic hamper from my husband and an anorak make up bag. From my friends, I got really nice jewellery, bath products and make up. Plus I got quite a bit of money - always a bonus!

Watching

I've managed to finish season two of 'Orange is the New Black' and I thought it was brilliant, far exceeding the first season. Can't wait for season three.


                                                                                             Image: Jill Greenberg 2013


I also watched the final episode of Fargo which I was a little bit disappointed with. I feel after the level of violence and 'on the edge of your seat' action, that the ending faltered a bit. Still worth a watch though.


                                                                                               Image: edgecastcdn.net

Wallender also came to an end this week. Such a great series, although I do find it requires a lot of concentration with the subtitles, especially watching it on catch up on the smaller computer screen. Apparently 540,000 people watched the finale though so I'm not the only one to have been enjoying it :)


That's been my week. A few ups and downs. but hopefully scaling the activities back means I'll be back to 'normal' soon! Hope you've all had a happy and healthy week.












Tuesday, 10 June 2014

ME/CFS clinic appt 8 - Stress Management

Appointment 8 happened last week and focused on stress management and a bit of CBT - challenging thoughts.

The stress management was helpful and outlined what can cause stress:

Taking on more than you can do and not allowing yourself to have enough relaxation time.
For me definitely! I recognised recently that a lot of the time I offer to take on more at work than others just because I don't want my colleagues/ manager to feel like I can't manage it. I feel like I have to prove myself. And in terms of socialising, I don't like to miss out even if that means getting payback. I am however getting better at all of this and am prioritising what really matters.

Never saying 'No' to people.
Well I feel proud to say that I am also improving in this area too. After that assertiveness course I feel I am getting my needs met now and thinking more about consequences before I reply with a 'yes I'll do it!' 

Never being satisfied with what you have achieved.
This is an issue for me that I desperately need to look at. Using decorating the house as an example, we have only been in three months and have done quite a bit, transforming the living room and sorting out a playroom and bedroom for my little boy. However I still find myself driven to have a 'perfect home' and need to rein myself back a lot of the time and remind myself that it's a work in progress and it's all about the pacing!  The perfectionist element of my personality is really overwhelming at times! And discipline is not always my strong point...

Getting frustrated by my situation.
Yes I do. Especially when some weeks can be so great and then for a reason that is self-inflicted, or something that I just can't pinpoint, I slip again. I'm learning to be a lot kinder to myself though and more accepting of my situation.


We looked at unhelpful thinking patterns (again! I think it might be a lifelong process!) and the Worry Tree which I hadn't seen before:


 

                                                                                                                                                      
During this session it felt like things were beginning to come to an end. We've covered all of the lifestyle management topics that the clinic offers and in terms of beginning to exercise, I feel I know where I need to start and how to build myself up slowly. So we are going to have a final session in a month's time and then there will be a follow up three month's after this. I think the co-ordinator for Action for ME in Scotland is looking for feedback on how people have found the clinic so I plan to get in touch with her, as overall I've found it a positive and helpful experience and hope that others can benefit from it.

Monday, 2 June 2014

What I've been doing...

Unfortunately I've had another viral infection/sinus infection so haven't been able to keep up the plan from the last ME clinic meeting, that I would do either yoga or stretches on a daily basis. I have managed to keep going to work though and in the main, do the walk to and from the bus stop (apart from a couple of times when I had to get a lift due to complete exhaustion...) It's been disappointing but I've managed to keep fairly upbeat and optimistic about the setback.

While I've been poorly I've had quite a bit of down time.  And I'm super excited that I now have a laptop. For the last few months I've been using my tablet to get online as a certain someone spilled juice on my last computer...


Reading

I've been reading this book for the last few months. I find I either race through a book if I'm really into it or I dip in and out for a longer period if it's a grower. This book was pretty gripping to start with and the title states exactly what it's about (if I went into any more detail I would give away spoilers so I'll keep schtum). I'm enjoying it but it has dragged a bit at times when the chapters have reverted to his past life. However I'm nearly finished so I'm hoping the ending will blow me away!





Watching


I'm signed up to Netflix and have watched a couple of good indie films. The first was Amour and set in an apartment in Paris. It focused on the relationship of an octogenarian couple who were faced with the emotional and physical demise of the wife, due to experiencing a stroke. It was very heart-warming and heart-breaking and probably could have ended 1/2 hour before it did but all the same I thought it was a good film.







Another film I watched was 'Breathe In' with Guy Pearce and Felicity Jones. The theme was: American couple with a daughter, who are not entirely happy in their relationship, take in an English exchange student and Dad ends up having an affair with the student. Sounds a bit predictable but it was actually very tastefully done and the acting was superb. I liked this film more than 'Like Crazy' directed by the same guy that also starred Felicity. Worth checking out...






In terms of TV I'm enjoying this new series of Wallender (the Danish crime drama) and also Fargo (the American crime series based on the film of the same name). Fargo only has a few weeks to go so it will be interesting to see how it ends.


Socialising


Although I've been poorly I have managed out a couple of times, the first occasion was to see my friend for an hour and since it was a sunny day, we headed down to the park and picked up a couple of healthy juice and sugar free cakes. Felt indulgent in a saintly way!






The other time was a short walk in the woods beside my house. Although Rhodendrons are considered a weed here due to not being indigenous to this country I thought the flowers were still very pretty.





Buying


I've been looking for a showerproof jacket. I have a 'technical' waterproof jacket that I bought a few years back but it's pretty fugly and although it's required for the Scottish climate, I needed something a bit more trendy for work/ wearing to the park so I opted for this. It hasn't arrived yet but I'm hoping it will suit. I liked the Boden wax jackets but this was half the price! And it came in Tall which is a bonus.






Listening 


I've been listening to quite a bit of stuff on Spotify and am really liking Foxygen (although I'm quite late to the party I think) and also Parquet Courts. They sound a bit like an early Kings of Leon but cooler...





So that's been my week. I seem to be coming out the other side of this bug so hopefully will get back to downward dog soon...







Thursday, 22 May 2014

ME clinic appointment 8

I had another appointment at the ME clinic last week and explained that I felt I had been pushing things too far. I wasn't sure how my therapist would react but she was very understanding and acknowledged that she had given me too much to focus on. She recognised that the cardio circuit was tough especially on top of work and looking after my little boy. So I've gone back to the walking with stretches on the days I am working and gentle yoga on the days I'm not. I think that will hopefully give me a baseline and if after a few weeks that's going ok then I can step it up again slightly.

I've been really knocked off with my hormones this month which has been frustrating and I stayed at my parents for a few days so my diet and routine has slipped. It's very noticeable when I stray away from the things that help me, like the healthy eating and the routines I have,  but sometimes it's worth the payback  ;)



Because my energy levels have been a bit lower and my brain fog has been bad, I've found it tough entertaining my four year old.  I'm always aware of the potential for him feeling lonely as an only child (I also have no siblings so have experienced it first hand!) I try to ensure on the days I am off work and he has no nursery, that he has contact with other kids. Today we went to this very cool kids cafe which has a play area for babies and preschoolers. The bonus is that there is a nursery nurse who watches them while you have a quiet coffee. Can you spot the theme!?

Monday, 12 May 2014

ME Awareness Day

Today is international ME awareness day so I'm joining in with lots of other bloggers to write a post about how ME affects me. I'm lucky to have mild ME which means that generally I can manage to live, what looks to the outsider, a relatively normal life and the reason we call it an invisible illness, however it still impacts on my life. I cannot do the amount of exercising and socialising that I used to do before I became unwell in November 2002. I regularly experience flares in my symptoms (some of which are easier to recognise the triggers for than others) and have had a few serious relapses over the years.   I struggle with my memory and concentration, i'm sensitive to alcohol, I experience cardiac issues and I never wake up feeling refreshed!
However I know I'm luckier than others more severely affected and as I've improved greatly over the years I keep positive that I will continue to do so. Anyway I've answered a few basic questions about ME and my experience. I hope you find it helpful.

What is ME? 


ME or myalgic encephalomyelitis is a disabling neurological condition. The symptoms include; 

Fatigue (persistent) 
Pain
Brain fog (problems with concentration , memory) 
Problems with mood and anxiety
Issues with the nervous system (dizziness, poor temperature control, palpitations) 
Sleep issues 
Visual disturbances 
Increased sensitivities (foods, medication, alcohol) 
Digestive problems 

This is only a snapshot of symptoms for more info look at action for me symptoms

What causes ME? 


No one knows yet however pathogens, viruses, immunisations and extreme stress (trauma) have been implicated as triggers. A stressful lifestyle appears to be a contributory factor or certainly perpetuates it. 

For me it hit very suddenly. I had been working shifts in a busy mental health ward and burning the candle at both ends, regularly going out drinking and clubbing with friends. It was after a night out that I woke up feeling like the life had been sucked right out of me. I had a flu type illness but it didn't go away... In hindsight I had noticed for a few months previous that I was a bit more `run down` and maybe this created the perfect environment for ME to develop. 

How is it treated? 


There are no medical treatments as yet. Certain medication can help mood issues, offer pain relief and help with sleep but no cure or treatment has yet been discovered to alleviate the symptoms of ME. Hence the reason the ME community are trying to raise awareness. 

What helps me? 


Pacing which is a way of using and storing energy to ensure that you keep your health at a stable level and minimise symptoms. This involves taking regular rests and not pushing your body by overexerting so you end up having a `crash`. 

Meditation is very helpful for me in terms of relaxation and reducing anxious feelings. 

A healthy diet. I don't drink coffee as I'm very sensitive to it and generally try to reduce my caffeine levels. I have reduced my sugar intake and try to eat as little processed foods as I can. 

Gentle exercise. Walking, gentle yoga and stretching help to keep my muscles and heart in shape (to some degree!) 

Keeping stress levels down. I work in a challenging job but luckily have a supportive team. I try to let things go that irritate me and cause stress but its not always easy! Mindfulness and meditation help somewhat with this. 

What hinders me? 


My hormones! Every month I feel a lot worse just before my period. I suffer extreme PMS. 

Alcohol. I still drink but I pay for it... I find three drinks is usually the maximum I can cope with and I get very drunk very quickly! 

Caffeine is a big no no. 

Too much exercise-  causes post exertional malaise. 

Sugar sends my blood sugars haywire and affects my energy levels. 

Stress! 

Extremes in temperature affect me but in do feel better in the sunshine. Shame I live in Scotland where we don't see the sun too often ;) 








So this is a brief overview of my experience of this hideous illness. I`m more accepting of it now and try to manage it as best as I can but I still wouldn`t wish it on my worst enemy! 

If you are on twitter check out #may12blogbomb for other blog posts on ME. 

Hope you are all having a happy and healthy day x 










Monday, 5 May 2014

Assertiveness and ME

This week I attended an assertiveness course through work. It all came about after a dip in my confidence following my three months of sick leave due to a relapse at the end of 2012. It took me a while to get back to how I was pre relapse and as a result I was understandably a bit anxious. My manager suggested this course. However there were no spaces available at the time so roll on 15 months and he advised me that I was now able to go on the course. I wasn't sure I needed it to be honest. I felt like I was managing well at work now and could be assertive when I need to be. However I decided that there was nothing to lose and went along.

I thought that the course might have just involved telling us the differences between submissive, aggressive and assertive behaviour and the skills needed to assert yourself. Actually surprisingly there was a lot of self awareness to be done and I learned quite a bit about myself and the reasons why I communicate in a particular way; the influence of my parents, school, peers, work, my relationships. Although this course was specifically for work, in my personal life there are quite a few situations that mean I need to be aware of my communication style. These include my relationships with friends, family and also my son. With assertive behaviour you have a right to have your needs met but equally need to respect the views of others.

We did a few questionnaires during the course and unsurprisingly I came out as being a 'people pleaser' and a 'perfectionist'. I often put others needs before my own. I think that's quite a common trait in ME sufferers. I have a habit of agreeing to do things without thinking about the impact first. So that's the first thing I need to look at. Secondly I tend to hold onto stuff I am unhappy about until it gets too much and then I let it out, ranting for a while - not helpful as the person on the receiving end gets defensive and  switches off meaning there is no productive outcome.

Being submissive and aggressive are actually pretty tiring and stressful styles of communication and as a result take a lot out of us. Although initially it can be uncomfortable, getting into the habit of being assertive can only be a good thing. It can make us feel more empowered and our voice gets heard, while the other person/people also feels listened to and respected.

We focused on the drama triangle (karpman) nd transactional analysis (Berne) should you wish to look into what I've talked about further.

Do you find it hard to be assertive?


Sunday, 27 April 2014

ME/CFS clinic - appointment 7 heart rate and cardio



The time between appointments has been a bit longer hence the reason I haven't blogged in a while. At my last appt on Friday we chatted about my progress and I explained that the viral infection had hindered things but now I'm managing two ten minute walks on work days and have been doing the Pilates exercises twice a week.

To be honest I'm not sure Pilates is for me. I find it a chore to do and think I would much prefer to do yoga so I think I`ll go back to my `beat fatigue with yoga` DVD.

My therapist explained about MET which is the metabolic equivalents of how intense an activity is. So making the bed, carrying heavy groceries, swimming and unloading the washing machine are all considered to be of high MET value. She gave me a calculation to figure out what my maximum heart rate should be during exercise so I can avoid PEM (post exertional malaise) the next day. Interestingly she said this also applies to a regular person doing exercise (although they could maybe push up to 80% of their resting heart rate). 

Here is the calculation:

220- (your age) = (answer)  then x by 0.6 = (answer) then x by either 0.60 or 0.75 depending on whether you want to work at 60 or 75% of your heart rate (or anywhere in between). The total should give you a number roughly between 100 and 140. Hopefully that makes sense as maths was never my strong point at school!

I now have a cardio circuit to do but I`m going to attempt these on the days I'm not working. Will let you next time how its gone. Hoping I`ll be as fit as this by the end of the programme :D